oa Informed consent and the Arab-Muslim research participant: tensions and challenges

It is generally accepted that the notion of informed consent first received official recognition in the Nuremberg Code of 1948. The move, which was a direct response to the inhumane and frequently fatal medical experiments on concentration camp inmates in Nazi Germany, emphasized the significance of allowing human subjects to assert their autonomy by making a decision on whether to participate in a research project only after they have been provided with sufficient information relating to the research. The concept has since assumed a prominent role in regulating the recruitment of research participants. This paper seeks to challenge its suitability for research which does not involve contact with the human body especially where it engages participants who hold values different to the Western secular worldview upon which the notion was shaped. In particular, it looks at human tissue research (e.g. stem cell research and biobank projects) involving Arab-Muslims. It seeks to draw attention to that fact that for Arab communities which have harmonised Islamic values, the decision to participate in research is made by taking into consideration firstly not individual interests, but the right of God and the interest of the society the individual belongs to. Since they also tend to define themselves and their individual worth as relative to their family, personal autonomy is therefore an alien concept and the decision to participate is taken jointly with the extended family. This has a significant practical dimension as research involving human tissues is capable of revealing information both about the participant and those related to him by blood. Further, Arab-Muslims who decide to participate in a research project would be prompted by a sense of religious duty and social responsibility. They therefore have a vested interest in knowing that the means and end-products of the research are acceptable by Islam. Yet the traditional model of informed consent only focuses on information on risks and benefits of the research. There is therefore a need to either adapt its parameters or find a suitable alternative which is sensitive to and reflective of their values.